It’s really not that bad

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After my last post, I went back over some of the previous posts to see if I’d missed updating anything. OMG! It sounds like my life has been nothing but surgery recovery and doctors visits and medical tests. That’s not the case at all, so I thought I’d drop in a post about real life (vs. medicine).

I have been very busy with work (which is a good thing when you’re consulting). I’ve got a major project that has kept me working late hours and weekends (which is why I haven’t been posting much). Fortunately, RA is staying at bay, allowing me to do that.

The holidays were terrific. My husband and I had one of the most enjoyable trips to Las Vegas ever. Travel was a breeze, the hotel was great, we had an amazing meal at Sage at the Aria hotel, saw Penn & Teller (and heard Teller speak), and had the opportunity to rent a car and drive to areas around town we hadn’t visited before. My new knee, which wasn’t up to much when we visited in September, did great and I walked all over the strip without so much as a twinge.

We both had a touch of the crud between Christmas a New Year’s, but that’s pretty much cleared up now.

We have a major holiday coming up in the Spring so, on top of working 24 hours a day, we’re getting ready for that — and counting on both of us having good health to enjoy it. My New Year’s resolution is NO SURGERY in 2014 (after two in each of the last two years).

So my life really isn’t all about doctors and dealing with RA. There are some really good bits to enjoy as well.

Hope that whatever is going on in your life is also enjoyable. Thanks for checking in.

Pain is a four-letter word

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I’m a bottom-line, cause-and-effect kind of girl. You know, every action/equal and opposite reaction kind of stuff. Unfortunately, RA doesn’t always subscribe to the same theories that I do.

Pain is one of those things you learn about early in life. You get pinched as a baby — you hurt. As a child, you fall down and skin your knee — you hurt. But the hurt goes away. The pain heals along with the knee until both the skinned spot and the hurt are distant memories. Ergo, remove the cause (skinned knee) and the effect (pain) is also removed.

I saw my rheumatologist in December (and again today). It was my first visit since starting Cimzia and I wasn’t doing well. The Cimzia hadn’t yet started being very effective and I had finished the course of Mobic that I’d been on since knee surgery. So not only was I not getting full treatment for RA, I had lost the anti-pain and anti-inflammatory benefits of the Mobic.

I tend to equate pain with RA activity, kind of like that skinned knee of my childhood. Skinned knee = pain. Healed knee = no pain. Therefore if RA activity = pain, then no RA activity should = no pain.

I guess if I’d thought about it, I’d realize that’s not necessarily the case and so, during the conversation with my rheumatologist, I was caught a bit by surprise when she suggested something additional for the pain.

Unfortunately there is a lot of residual pain that comes along with RA. If a joint becomes damaged before RA is brought under control, that damage is going to continue to cause pain even if RA goes into remission. On a shorter-term scale, having RA means your joints or tissues are going to become swollen and/or inflamed. They don’t instantly revert to normal the moment that the RA calms down. It takes them a while to recover.

From that realization came the discussion with my rheumatologist that treating pain, although connected to treating RA, is a separate course of action. It’s something that I don’t necessarily think all doctors “get”. RA is a complex disease and there needs to be a multi-faceted approach to treating it. Not only do you need to attack the disease itself, there is the pain factor, and often other factors such as mental health and overall physical well-being that need to be addressed above and beyond the RA treatment plan.

In my case, we restarted the Mobic. While more an anti-inflammatory than a specific pain treatment, it can and does serve as both. My rheumatologist and I both agreed that I’m not a candidate for classic pain treatments — such as hydrocodone three times a day. My career is too challenging and lifestyle too active to be bogged down by these types of drugs.

My appointment today was much better than the last one. The Cimzia is taking effect although I can tell that it doesn’t quite “stretch” the full two weeks between injections. And the Mobic is helping. I had to go off of it recently for a few days and I could tell a real difference. So we’re continuing the Mobic and keeping the Arava/leflunomide at 20 mg per day as well as sticking (no pun intended) with the Cimzia.

So other than a miserable cold that my husband and I have been sharing, the New Year is off to a pretty good start.

Wishing you a pain-free 2014.

 

Where to start?

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It’s been a busy few weeks of doctors and I’m not quite done yet.

The day before Thanksgiving I had my first follow-up rheumy appointment since switching to Cimzia. I have to say that I’m probably on Santa’s “naughty” list. I could not tell that Cimzia was helping — at all. True, it hasn’t been three months yet, but it actually felt like I was losing ground. Cimzia is front loaded with the first three two-week dosages being two syringes before switching to one syringe every two weeks. Because my rheumy had provided samples, then I got a full “starter kit” with six syringes, I had extras. So after the first three “double” doses, I self-medicated and took a fourth double injection. (I know, I know, I know. Told ya Santa was bringing me coal.) I confessed all to my rheumy who really didn’t seem to think it was a big deal, but it was obvious I still had swollen joints. Interestingly the small joints in my hands and feet were giving me issues while previously it has always been my larger joints (hips, knees, elbows, shoulders). We decided to stay the course, but she added in 7.5 of Mobic twice a day. We decided that part of the issue is that I had been on Mobic during my knee recovery and I was no doubt feeling the effects of not being on it. I am doing better, but I don’t know if it’s the Mobic or the Cimzia is actually kicking in.

Then I had the follow-up with my spine surgeon checking on the progress of my spinal fusion surgery. Everything looks great. I am officially released forever (unless I should have any future issues). However, I talked to him about the tingling down my right arm and he believes it is most likely a pinched nerve in my neck that might be helped by a steroid injection.

He ordered an MRI of my cervical spine (to compare to one I had a couple of years ago). As it turned out, I was also scheduled for an MRI on my right shoulder to see if we can figure out why I’m having ongoing pain there. Both of those happened earlier this week and I was able to schedule them at the same facility at the same time. There was a bit of a last-minute scramble to make sure everything was pre-certified by the insurance company, but it all worked out.

So I saw the shoulder surgeon the day following the MRI. Nothing there that would account for the tingling sensation, but there is more arthritis in the joint since we did the second rotator cuff surgery in the fall of 2012 and there was quite a bit of fluid/swelling/inflammation in the bursa. So we did a steroid injection. It wasn’t one of those sub-acromial injections given by his PA, this was one of the deep, inside the joint, hurts like the dickens injection given by the surgeon. I only cried a little bit. It’s weird. My shoulder hurts from the injection, but it does feel better. Hopefully this will help. The surgeon said that at some point in the future I’m looking at joint replacement, but I assured him that we’re not there yet. I still have good range of motion and strength in the arm so unless that changes or the pain gets worse, I’m sticking with the original equipment in that shoulder.

So next week I go back to the spine guy to talk about the neck MRI. As badly as I love/hate steroid injections, I am definitely not looking forward to having my neck/spine injected. But the tingling is making me crazy, so I need to do something.

I also go in late next week for one of those once-a-decade tests that you get to have if you’re over fifty. Not looking forward to that, either, but at least I get a day off of work.

Then it’s Christmas. And the new year. And the new insurance. I was so happy when I got my new insurance card in the mail. With all the chaos caused by changes in the insurance laws, I was really happy to know that I had officially made it through the system and have coverage starting January 1.

I hope your medical schedule is less busy than mine has been and that whatever medical situation you find yourself in, it results in good news. Thanks for checking in.

 

Make your vote count

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As reported earlier, I was once again included in Healthline’s top blogs for the year. Some of my favorites were also included. But now it’s time to vote and there is actually prize money at stake. I’m not going to shamelessly ask you to vote for me because (as much as I enjoy my own blog) there are some really great blogs out there in the running. So if you want to vote for one of them (or even me), go here. (If you’re looking for specific blogs, it’s probably easiest to look in the alphabetical listing, rather than the most popular list.) You can vote for multiple blogs and you can vote once every 24 hours.

And for the two people who have already voted for me, wow. And thanks!

 

Universal vs. adaptive – kudos to Vancouver

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I learned something new yesterday. (As you get older this happens less and less. Also if you’re 20 years old and know everything …). I learned that Vancouver is the only city in Canada with its own building code.

Vancouver has taken these powers to ban doorknobs from future housing projects. Instead, lever-type handles are mandated. What does Vancouver have against doorknobs? Probably nothing personal, but they’re simply not as accessible for many people (like people with RA who have difficulty grasping and turning a standard knob). Vancouver is using its unique powers and building code to move toward universal design rather than adaptive design.

Most construction is adaptive. That is, you build something, then you adapt it to whatever is needed. Kind of like building a house then installing a wheelchair ramp. Universal design looks at the needs of those who will use it and incorporates those features into the initial design — like putting in levers rather than knobs.

RA’s super hero, Rheumatoid Arthritis Guy, has a strong architectural and design background. He has written often about his dream that building design would incorporate just this kind of thinking. Well, kudos to Vancouver. They’re not all the way there, but taking a step like this is proof positive that people who have the power to make changes are actually thinking about things like this. (There’s a lot of free thinking out there on the left coast of North America. Some of it is actually brilliant.)

I don’t know why this news makes me so incredibly happy. Maybe because I’m married to an architect so I get a first-hand look at some of the archaic and convoluted building (and even ADA) codes out there. And once these codes are accepted, inertia alone makes them difficult to change. It may only be one candle in the darkness, but I am hopeful that other cities and government agencies can see the amazing clarity of Vancouver’s approach.

I hope whatever doors open in your life today bring you welcomed surprises. Thanks for checking in.

It’s always something

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So I have this new thing going on. (I know, right?) It’s this pins-and-needles sensation that runs down my right arm. It varies from the feeling that I have ants crawling on me to real electrified zingers. It always starts at the top back of my shoulder and travels down the front of my arm and ends up inside my thumb. It’s happens consistently when I do certain things, so I’m thinking a nerve gets trapped somewhere. (Patient: “Doctor, doctor it hurts when I do this.” Doctor: “Well, stop doing that.”) Based on what triggers and relieves it, I suspect the issue is in my neck rather than my shoulder, although I have had two rotator cuff surgeries on that shoulder.

I was telling my friend about it and she asked me, “Do you think this RA related or something new?”

That actually took me aback because even though I preach that “normal” people have joint issues, I had automatically assumed that RA played a part in whatever degeneration is causing this latest problem. But obviously not everyone who needs spinal or shoulder surgery suffers from RA.

I’ve written before about the fact that once you’ve been diagnosed with RA, it’s hard to evaluate aches and pains without putting them in the RA perspective. Sometimes it is, after all, normal to hurt as we all know that anyone (even those lucky people without RA) who overdoes will likely have sore muscles and even sore joints.

In the long run, I don’t guess it matters. The good news is that I have follow-up appointments with both my shoulder surgeon and my neurosurgeon (who did my earlier back surgery) in the near future. They’re bright, talented people who listen to their patients so I’m sure we’ll figure out what’s going on and how to relieve it.

I hope that whatever zingers are in your day today bring a smile to your face. Thanks for checking in.

Not the way I planned it

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For a week or so I’ve been thinking about a blog loosely titled, “Top Five Things They Don’t Tell You About RA.” My thinking was that people, particularly those who are newly diagnosed, get overwhelmed with all the negative things that come up when you research the disease. You know what I’m talking about, particularly those statistics about disability.

Part of the impetus to write such a post is the lack of general knowledge of RA. It’s not exactly like some other chronic diseases. For example, I have diabetes on both sides of my family and I’ve seen how people with the disease can manage it and lead full, rewarding lives. Now that I’ve lived with RA for more than five years, I thought it would be good to put a bit of similar perspective in the overall mosaic of RA information out there.

The first point I was going to include was fine — something along the lines of “It’s a diagnosis, not a prison sentence.” The point being that while the statistics are concerning, there are large percentages of people with RA who (like my diabetic friends) manage the disease and live life well, including those who go into remission.

But then I ran into trouble because I kept coming up with negative things I didn’t know when I started this journey. For example, when I was younger I swore I could never be a drug addict because I would never, ever be able to inject myself. Says she who has been giving herself injections of biologic medications for the last five years. And for all of us needle-phobes, there is also the ongoing onslaught of lab tests, flu and pneumonia shots, etc. And while they don’t necessarily tell you that sometimes you’ll feel like a pin cushion, the fact is, sometimes you do.

I was also going to talk about how empowered you must be in managing the disease and that not all rheumatologists are created equal. If you aren’t able to communicate with your doctor, then you need to find one who will listen. However, pointing out that not all rheumatologists care and that there is a decided gulf between current medical thinking and the patient experience, would also be pretty scary to someone who is newly diagnosed. (It’s certainly scary for me!)

While the original post isn’t going to see the light of day (or cyberspace), what happened is that I’ve come to the conclusion that it is all about the patients and how they approach the disease. You have to have the resiliency to make it through the bad times (and there will be those) and the mental attitude to make the best possible outcome that you can. That means not only taking care of yourself, but (if possible) not letting your disease overwhelm your life. It’s true that there are people who are in severe pain and who are disabled and, for those, that’s not an option. But for the rest of us, keeping a firm eye on the life we want to live gives us both the hope and the determination to do so.

So for those of you who are recently diagnosed (and even those “old timers” like me), there will be a lot of things you will learn as you deal with the disease. Not all of them will be pleasant. You will no doubt build a lot of inner strength as you move forward. But know that there are a lot of us who are also making that journey, so there is a world of wisdom, support, and even comfort available to you.

I hope whatever top five things happen in your life today are wonderful.

Thanks for checking in.

Okay, THIS is the final knee replacement post

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Okay, I promise this is the last word on my knee replacement. I went to the surgeon today for my final check up and everything looks good. I’m released until my one-year check up in 2014.

I have added a new page with pictures that range from the day after surgery through today. Click on the TKR Surgery Pics link above. (Not for the faint of heart.)

Thanks for checking in.

Final Update on the Replacement Knee

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It seems like forever since I posted. It’s been a crazy couple of weeks with a huge project dropped in my lap (I wasn’t expecting anything until next month), a trip to Washington, D. C. for business and a full day in jury duty.

I did pretty well traveling on my own to DC. The knee is healing nicely (as is the back surgery) and the Cimzia seems to be keeping the worst of the RA symptoms at bay (although this lovely rainy fall weather we’re having in Dallas is giving it a run for its money).

But, about the new knee. It’s doing quite well. I’ve gotten to point, as I have with my new hip and shoulder, that I don’t really think about it any more. True, there are times that it does bother me and it still “clunks” more than I would like (meaning there is still some swelling/inflammation floating around), and occasionally for no particular reason, it seems to seize up. But all of those things are generally short-lived and not very intense when they do happen. So overall I’m quite pleased. I actually wore some 3-inch high heels to a wedding a couple of weeks ago without real issue (but don’t tell my doctor that!).

Here’s the latest picture taken just past the three-month post surgery point. As you can see, most of the swelling is gone and the scar is looking pretty healthy. There areIMG_0228 parts of the scar that have all but disappeared, which is a good thing.

I go see my doctor in a week or so, but unless there is something worth mentioning (which I hope there isn’t), I’m assuming that I’m on the downhill slope to total recovery and probably won’t dedicate another whole post to the knee.

I appreciate everyone’s interest and good wishes as I’ve gone through this process. Thanks for checking in.

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